Shows
PEP Talks ISPEPFor a PEP it is always personal: Bringing the passion and persistence in the patient voice into paediatric trial designThis Pep Talks episode features Begonya Nafria Escalera, head of patient engagement in research at St. John De De Children's Hospital, who champions the inclusion of children and young people in clinical research, a practice not yet widespread in Spain. Begonya discusses the challenges of communicating complex trial protocols to young patients and their families, highlighting the innovative methods her department employs, such as high-realistic simulation, to ensure trials are both patient-friendly and effective. Sharing her personal journey, Begonya emphasises the importance of publishing successful patient involvement projects to inspire others. The conversation underscores the...2025-01-2721 min
Trials with Maya ZSmall Patients, Big Challenges: Obstacles in Paediatric Rare Disease Research with Begonya NafriaMeet Begonya Nafria - Head of the Patient Engagement in Research Department at Hospital Sant Juan de Déu Children’s Hospital, championing the cause of paediatric clinical research. In this eye-opening episode, Begonya and Maya delve into the unique challenges of conducting clinical trials for children, especially those with rare diseases. Begonya highlights the startling fact that 95% of rare diseases have no approved treatment, emphasizing the urgent need for increased research investment and improved access to cross-border clinical trials for children and young patients in Europe . This conversation underscores the importance of meaningful patient engagement in designing better tria...2024-08-2234 min